Work-related resources and demands predicting the psychological well-being of staff in children's hospices.

OBJECTIVES: This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work. METHODS: The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory. RESULTS: There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = -0.31, p = 0.115). Burnout did not predict work engagement (b = -0.09, p = 0.194). SIGNIFICANCE OF RESULTS: The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

A new scale assessing the stressors and rewards of children's hospice work.

BACKGROUND: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams. METHODS: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA). RESULTS: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate-the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale). CONCLUSIONS: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff.

Staff well-being in UK children's hospices: a national survey.

OBJECTIVES: Poor psychological well-being among healthcare workers can have numerous negative impacts, but evidence about levels of burnout in children's hospice care staff is limited. This study aimed to determine the prevalence of burnout and to explore the association between staff characteristics and support mechanisms with burnout among children's hospice care staff in the UK. METHODS: Two national online surveys collecting data on hospice care staff psychological well-being and hospice organisational characteristics. All children's hospices in the UK were invited.Thirty-one hospices (out of 52) responded to the hospice survey and 583 staff responded to the staff survey. Data collection took place between May and December 2020 and measures included the Copenhagen Burnout Inventory, Work Engagement and the Health and Safety Executive Management Standards Indicator Tool. RESULTS: Burnout prevalence was 11% and mean burnout score was 32.5 (SD: 13.1). Burnout levels were independent of working arrangements (eg, working from home or at the hospice) during the COVID-19 pandemic. Hospices performed well in most management standards, but poorly on the 'Control' domain. The average Work Engagement score for staff was 7.5 (SD: 1.5). CONCLUSIONS: Burnout levels for staff in children's hospices in the UK were lower than in other healthcare settings, with this comparing to 17.3% among palliative care staff generally. Overall, hospices performed well in management standards and there was no indication of urgent action needed. Work Engagement in our sample was higher compared with other National Health Service workers during the COVID-19 pandemic.

Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.

BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0-18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). METHODS: Medline and PsychINFO (1/1/2010 - 11/8/2020) and CINAHL Complete (1/1/2010 - 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff's attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. RESULTS: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff's empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). CONCLUSIONS: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development.

Psychological well-being of hospice staff: systematic review.

BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).

Factors influencing the mental health of autistic children and teenagers: Parents' observations and experiences.

LAY ABSTRACT: Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child's mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child's difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.

The Need for Culturally Competent Care Within Gastroenterology Services: Evidence from Research with Adults of South Asian Origin Living with Inflammatory Bowel Disease.

BACKGROUND AND AIMS: It is widely acknowledged that the incidence of inflammatory bowel disease [IBD] is rising within South Asian populations, yet research into the experiences of this group of patients is rare. In this study the lived experiences of UK South Asian adults with IBD, including support from gastroenterology services, was investigated. METHODS: A sample of 33 patients representing the diversity of the UK South Asian population were recruited through five gastroenterology clinics in England. In-depth semi-structured interviews were conducted, audio-recorded, transcribed and analysed using the Framework approach. RESULTS: Although many experiences align with those of the general IBD population, participants believed that South Asian cultures and/or religions can lead to additional challenges. These are linked to: family and friends' understanding of IBD; self and family attributions regarding IBD; stigma surrounding ill health; the taboo of bowel symptoms; managing 'spicy food'; beliefs about food and ill health; roles within the family; living with extended family; the use of complementary and alternative therapies; and visits to family overseas. Religious faith helped many to cope with having IBD, but symptoms could hamper their ability to practise faith. Gastroenterology services were viewed positively, but unmet needs were identified, some of which were culturally specific. CONCLUSION: Gastroenterology services have an important role to play in helping patients to overcome the challenges they encounter in their everyday life, both by providing individual patients with culturally appropriate care and advice, and via interventions to increase awareness and understanding of IBD within wider South Asian communities.

Measuring Burnout in Pediatric Oncology Staff: Should We Be Using the Maslach Burnout Inventory?

Burnout in health service staff is a cause for concern since it has negative consequences for the individual affected, the wider organization, and patients. The Maslach Burnout Inventory-Human Services Survey (MBI-HSS) has been widely used to assess the prevalence of burnout within oncology services. The MBI-HSS is a self-report measure comprising three subscales-Emotional Exhaustion (EE), Depersonalization (DP), and Personal Accomplishment (PA). This article reports on the first study to investigate the psychometric properties of the MBI-HSS when administered to pediatric oncology staff. Two hundred and three pediatric oncology staff recruited through seven UK Principal Treatment Centers (PTCs) and a children's cancer charity completed the MBI-HSS. The factor structure of the instrument was tested using confirmatory and exploratory factor analysis, with Rasch analysis applied to assess whether the measure meets the requirements of an interval-level scale. Cronbach alpha was used to assess internal reliability. Factor analysis did not support the traditional three-factor structure of the MBI-HSS but instead suggested seven factors. Rasch analysis and alpha coefficients indicated that while the EE and the PA subscales fulfilled the requirements of an interval-level measure for group-level diagnosis, DP did not. Further investigation revealed a "floor effect" on many DP items. Whereas the EE and PA subscales of the MBI-HSS can be used in research with pediatric oncology staff working in PTCs, there are considerable problems with the DP subscale, and researchers should be cautious in interpreting data from this subscale.

Understanding care closer to home for ill children and young people.

AIM: To gather evidence to support the implementation of standard six of the National Service Framework for Children, Young People and Maternity Services (Department of Health and Department for Education and Skills 2004), which states that care should be provided as close to home as possible. METHODS: A mixed methods study comprising of a systematic review, a national survey of provision of care closer to home (CCTH), four in-depth, qualitative case studies and a cost analysis. FINDINGS: The systematic review suggests that CCTH is no less clinically effective than hospital care. Services identified by the survey fall into three distinct models of provision. Case study data show that families preferred CCTH, but staff face difficulties at organisational and practice levels. Cost analysis suggests there can be cost savings with CCTH, but several factors influence these. CONCLUSION: CCTH may be an effective and feasible option for children and young people who are ill.

Care closer to home for children and young people who are ill: developing and testing a model of service delivery and organization.

AIMS: To report findings of a national survey of care closer to home services for children and young people and a typology based on these findings. BACKGROUND: Providing care closer to home for children is a policy and practice aspiration internationally. While the main model of such services is children's community nursing, other models have also developed. Past research has proposed a relatively static typology of services, determined by where they are based, whether they are generic or specialist and whether they provide short- or longer-term input. As services develop, however, this typology needs further elaboration. METHODS: A two-stage national survey of all primary care and hospital trusts in England, in mid-2008. RESULTS: In all, 67% of trusts responded to the screening questionnaire and 75% of relevant services to the main stage questionnaire. Thirteen distinct types of services were identified initially. Cluster analysis of delivery and organization characteristics then identified a three-model typology: hospital-based, condition-specific services (36%); children's community nurses and other community services (45%) and other (mainly therapy-based) services (19%). The models differed in staffing, costs, functions, type of care provided and geographical coverage. Only a third of nurses in teams were paediatric-trained. CONCLUSION: Care closer to home services are an established part of care for children and young people who are ill. They deal with complex and technical care and can prevent or reduce the length of acute hospital admission. Lack of readily available information about caseloads, case mix and costs may hamper their further development.

Burnout, psychiatric morbidity, and work-related sources of stress in paediatric oncology staff: a review of the literature.

OBJECTIVE: A growing body of research suggests that staff working in adult oncology services are at risk of burnout and psychiatric morbidity, but whether or not these findings can be generalised to staff working in paediatric oncology is questionable. This paper reports the findings of a comprehensive review of the literature on burnout, psychiatric morbidity, and sources of work-related stress in paediatric oncology staff. METHODS: Electronic searches of MEDLINE and PSYCHINFO. This was followed by a screening process, during which papers where checked against inclusion and exclusion criteria, and the quality of study reporting was assessed. Information about the study design and methods was then extracted from each paper so that the methodological quality could be critiqued. RESULTS: Ten studies meeting the review inclusion criteria were identified. No studies were identified which compared paediatric and adult oncology staff. Research on paediatric oncology staff has failed to use the well-established standardised measures of burnout and psychiatric morbidity employed in studies of adult oncology staff. There is some qualitative evidence to suggest paediatric oncology nurses experience a unique, additional set of stressors not encountered by colleagues in adult oncology services. CONCLUSION: The evidence on stress and burnout in paediatric oncology staff is extremely limited. In order to devise appropriate and effective interventions to support staff, we need to have a much better understanding of the level of burnout and psychiatric morbidity experienced by all members of the paediatric oncology multi-disciplinary team, as well as the factors that contribute to these experiences.

Managing controversy through consultation: a qualitative study of communication and trust around MMR vaccination decisions.

BACKGROUND: Controversy over the measles, mumps, and rubella (MMR) vaccine has reduced uptake, raising concerns of a future disease epidemic. AIMS: To explore parents' accounts of decision making relating to the MMR vaccine controversy, identifying uptake determinants and education needs. DESIGN OF STUDY: Qualitative interviews analysed using the 'framework' approach. SETTING: Five general practices in the Leeds area, 2002-2003. METHOD: Sixty-nine interviews conducted with parents of children aged between 4 and 5 years, and 12 interviews with primary care practitioners, managers and immunisation coordinators serving participating sites. Participants were interviewed one-to-one in a place of their choice. RESULTS: The vaccination decision is primarily a function of parental assessments of the relative acceptability and likelihood of possible outcomes. For most parents the evidence of science and medicine plays little role in the decision. Although local general practitioners and health visitors are trusted information sources, the influence of primary care providers on the vaccination decision is limited by concerns over consultation legitimacy, discussion opportunity, and perceptions of financial and political partiality. Parents and practitioners identify a need for new approaches to support decisions and learning when faced with this and similar healthcare controversies. These include new collaborative approaches to information exchange designed to transform rather than supplant existing parent knowledge as part of an ongoing learning process. CONCLUSION: The study identified new ways in which parents and practitioners need to be supported in order to increase understanding of medical science and secure more informed decisions in the face of health controversy.

An insight into the experiences of parents with inflammatory bowel disease.

AIMS AND OBJECTIVES: To identify parents' views, both positive and negative on: how inflammatory bowel disease (IBD) affects people in their parenting role; effects parents with IBD have noticed in their children; ways of dealing with any difficulties in parenting; and support needed by parents with IBD. DESIGN: This was a small-scale exploratory study, adopting a qualitative research design. A purposive sample of 19 mothers and five fathers with IBD was recruited through two hospitals and a voluntary group in the north of England. RESEARCH METHODS: Data were collected through a combination of focus groups and interviews, and analysed using the 'framework approach'. FINDINGS: The main positive effect for parents was developing a closer relationship with their children. When parents were experiencing symptoms there were difficulties in caring for young children; problems taking children to and from school, and attending school events; restrictions in social life; irritability and reduced tolerance of children. When in hospital, it was sometimes difficult to arrange for care of young children. These difficulties caused worry and guilt for parents, and a few spoke of periods of depression. Parents noticed that their children seemed caring and understanding of illness, but were also anxious when the parent was ill or in hospital, and reacted with anger or frustration to restrictions in social activities. Strategies commonly used to deal with difficulties were turning to family for support and trying to control symptoms. Support from health professionals was variable. Parents wanted more practical assistance, information for families on the effects of IBD, and support in coping with the condition. Awareness-raising about IBD was considered important within health, social services, education and housing departments. CONCLUSIONS: As a group in regular contact with parents with IBD, health professionals have an important role to play in providing support. Staff should be particularly vigilant towards parents with severe symptoms, mothers of younger children, and those receiving limited help from their families.

The meaning of parental illness to children: the case of inflammatory bowel disease.

BACKGROUND: Research on the impact of parental illness on children is sparse, and it remains unclear what kind of support, if any, families would value. This paper presents findings from the first investigation to explore the experiences of young people who have a parent with inflammatory bowel disease (IBD). DESIGN AND METHODS: This qualitative study involved interviews with 23 young people, aged between six and 20 years, who have a parent with IBD. A range of non-verbal techniques was used to facilitate interviews with young children. Data were analysed using the framework approach. RESULTS: Participants varied in their understanding and perception of their parent's condition and the extent to which they discussed it with family and friends. Some reported being unaffected by their parent's illness. The main negative effects on everyday life were restrictions on social activities, parents being unable to do housework, children having to be well-behaved and parents becoming withdrawn or irritable. Experiences could lead to feelings of sadness, worry, anger and guilt. The few who reported positive effects described spending time with the parent while ill, being allowed to be more independent and being close as a family. Relatives, friends, neighbours, service providers and young people all played a role in helping to manage the situation, and most participants felt that their family did not need additional support. However, some young people would value advice and information regarding the condition and opportunities to meet others in a similar situation. CONCLUSION: IBD is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of family members. In addition to supporting patients, health professionals have an important role to play in offering advice and information to others affected by the illness, including children.